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After a stillbirth, grieving parents create spaces in hospitals to process bad news

"Jane's Room" is the legacy of a baby who died before she took her first breath.

Bob and Berkley Wellstein discovered that their baby girl, Jane, died before she took her first breath. In her honor, they are trying to help other families facing a similar heartbreak.

Though Jane's heart had stopped beating while still in utero, Berkley still had to go through the excruciating process of labor and delivery at Northwestern Prentice Women’s Hospital in Chicago in January 2012.

Her family gathered in the general waiting room, where they had to cope with this devastating news alongside other families celebrating the delivery of healthy, happy babies.

"It was likely uncomfortable for everyone," Berkley tells TODAY.com on what would have been Jane's 12th birthday.

I never wanted the brevity of Jane's life to define her worth.

Berkley Wellstein

While still mourning the loss of their first child, the couple decided to take action.

They didn't want other families to experience grief in a cold, public hospital waiting room as they did. They wanted to create private, comfortable spaces for families or hospital staff processing trauma or loss.

A "Jane's Room": After their own devastating loss, one couple thought about how they could help other families.
A "Jane's Room": After their own devastating loss, one couple thought about how they could help other families. Courtesy Jane's Room

So they created Jane's Room, an organization dedicated to providing the literal and emotional space to grieve. In the last 11 years, the organization has created rooms at 14 different hospitals, and two more are currently being developed. Over 850 families will walk through a Jane's Room in 2024.

"When we went through this, I never wanted the brevity of Jane's life to define her worth," Berkley says. "Through Jane's Room, we’ve been successful at keeping her memory alive."

Jane's story

Bob and Berkley were absolutely thrilled to discover they were pregnant with their first baby in July 2011. "The pregnancy was smooth and wonderful," Berkley recalls.

At 32.5 weeks pregnant, Berkley felt a "lack of movement" and she and Bob went to the hospital just to make sure nothing was wrong. But the fetal doppler only registered silence. "At one point, I did hear a faint heartbeat," she says, "but it was mine."

Upon learning that their daughter had died in utero, Bob and Berkley were in a state of shock and disbelief. "I was so naive about the fact that something like this could happen," says Berkley.


Berkley Wellstein holds her daughter Jane, who died in utero.
Berkley Wellstein holds her daughter Jane, who died in utero.@janesroomfoundation via Instagram

Doctors induced labor and Jane was born the following day, Jan. 25, 2012. The umbilical cord was wrapped around her neck twice. The family confirmed via autopsy that this was, in fact, the cause of her death. Oddly enough, they felt "lucky" that they had an answer to why Jane died; many parents of stillborn babies never receive that type of closure, they say.

At the hospital, they were able to hold Jane, spend time with her and take pictures with her. The Wellsteins were touched by the gift they were given from the hospital: It was a small bag of keepsakes to help them memorialize Jane, donated by another family who went through a similar loss. Even though the couple left the hospital "shell shocked," they say, they knew they wanted to pay it forward and help others in a similar way.

The birth of Jane's Room

"Bob wanted to 'fix' this," Berkley explains. "Within months, he started reading books about nonprofits and getting into the world of how to give back."

Meeting with the philanthropy director and their social worker at the hospital where they delivered Jane, the Wellsteins kept talking about finding a space in the hospital where families could process their emotions without strangers and machines and noise. Throughout the planning process, the social worker started referring to this private grieving space as "Jane's Room," and the name stuck.

On Jan. 25, 2013, on what would have been Jane's 1st birthday, the very first Jane's Room opened to the public.

Empty rooms in hospitals simply don't exist — every square foot generally has a purpose — so the Wellsteins had to get creative in carving out space within the building. They target large volume birthing hospitals with a high-risk patient population.

Though they began by using hospital interior design teams, they realized they needed to bring in an outside designer to make the room look "as least hospital-like as possible," Berkley says.

And what was the number one request from families? "To make sure the couch is comfortable," Bob says.

A comfortable couch is the number one request from parents who have been through the grieving process.
A comfortable couch is the number one request from parents who have been through the grieving process.Courtesy Jane's Room

Some hospitals use the room as a quiet place for parents of babies in the NICU to take a break; others use it for staff members going through traumatic experiences with their patients.

Jane's Room's impact extends beyond physical spaces and into education, knowledge and training for hospital staff.
Jane's Room's impact extends beyond physical spaces and into education, knowledge and training for hospital staff.Courtesy Jane's Room

The Jane's Room organization does more than just create physical rooms. They also provide training about perinatal bereavement for hospital staff, they bring in families who have lost a child to talk to doctors and they provide resources for families undergoing loss.

In short, Jane's Room tries to produce whatever support a hospital may need for comforting grieving families.

Jane's impact lives on ...

As for Jane, her life may have been brief but her impact looms large.

Since Jane's birth, the Wellsteins added three children to their family: William (9), Georgia (7) and Vera (4). All three know and love their older sister, Jane.

In fact, Berkley says they spoke to their classmates about their sister recently. "I'm so proud that they understand as much as they do," she says.